Imagine…

September 8, 2011

Learning will be cast into the mire and trodden down under the hoofs of a swinish multitude.

–Edmund Burke, brilliant bloke

Imagine a belief so tightly held that any one who spoke against it was instantly vilified. The autism community wastes so much time, so many bytes, vilifying others because of differences in beliefs about causations, differences in beliefs about treatments, differences in beliefs about whether autism is a personality to be cloaked in pride or a crippling disability to be cure of at all costs.

Stephanie wrote a follow up piece to one I wrote on facilitated communication and the central proponents of neurodiversity being staunch advocates and promoters of FC. In the comments she wrote that she doesn’t commit “to the hard-line scientific stance” I do. Ah, and there’s the rub. In the autism community itself, I’m not sure very many do. Fair enough, in the wider world, most don’t.

Most people are not skeptical. That doesn’t make me superior, better, or infallible. It doesn’t even make me insusceptible to well-packaged woo. Hurt enough and you’ll try a lot of stuff to make the pain go away. Suffer enough and you’ll do anything, skepticism gone in the midst of desperation.

I get it: most people like a little bit of woo in their lives, dwell in grays so much better, appreciate the idea of things that can’t be reduced to scientific facts. My first thought after reading that comment was that if more people adhered to hard-line scientific stances, there’d be a whole lot less people getting hurt by woo.

And there’s so much pseudoscience masquerading as science that one wonders that anyone can wade through the muck of it and come out clean. And this is endemic. Perhaps even epidemic. Nay, I say it is a veritable frakking tsunami.

So while I wish more people took a more skeptical approach to the treatments they choose to use, endorse, sell, etc, I understand how compelling testimonials are, how persuasive the pitch men are, how bad it can be when one is suffering and simply wants relief, whatever the cost: my beef isn’t with them. It’s with the charlatans who take advantage of others. And, yes, it’s against those individuals who, despite the exposure to the science, choose to push it, promote it, and skewer anyone who dares to speak out against their own sacred cow.

Rachel asked in a comment to my post on Autism Speaks and Wakefield if I would back off my denouncement of the neurodiversity movement given Autism Speaks’ unfortunate, misguided decision to sponsor the National Autism Association’s convention. I’m not backing off my denouncement of a group that’s supported FC since at least 2008. That’s not evolving; that’s maintaining the status quo.

I’ll acknowledge political expediency and the need for groups to appeal to the largest number of people when raising money. Sometimes inclusion isn’t about a belief in inclusion. Sometimes it’s about the money, and there can be no doubt that the more inclusive a group is of its core constituency, the more money it will raise, the more supporters it will have. This is true of all the autism organizations that raise money or accept donations. Most of those organizations are run so that there are 990s each year for them so that some level of transparency of what funds are raised and how they are dispersed is there for the public to make a decision. At least we can look and make our decisions based on that level of transparency.

“When bad men combine, the good must associate; else they will fall one by one, an unpitied sacrifice in a contemptible struggle. –Edmund Burke

We stand, this community, in so many divides now, that it’s a wonder any two of us can get together on anything. And yet we do. I know we do, as I see it in bloggers who support each other on a daily basis, wishing the others well, praying, caring, giving.

“I am convinced that we have a degree of delight, and that no small one, in the real misfortunes and pains of others.” –Edmund Burke

Yes, some seem to travel the interwebz looking to get their rage on. It happens far too often and has nothing to do with the people they attack or what the people are saying. Reasoned argument far too often gives way to nasty mudslinging to see who can inflict the most harm. And this is certainly not restricted to our community. Oops. How dare I call it a community, right? Divisions…

A community doesn’t mean everyone is homogeneous and shares the same features. It doesn’t even mean it will share all the same goals and core beliefs. And we constantly shift our communities, from the micro level to the macro to suit our needs at the time.

Money, well, that’s a great leveler. Everyone can belong. And so is hate. Hate the same group as us? You’re in, buddy!

Here’s the thing. I get that the people in the autism community are just that: people. They have agendas, ideologies, axes to grind, all the grist and mill that accompany social groups of people. Add to that, we have the fact that almost everyone in this community has some issues communicating clearly, and that’s even if they’re “neurotypical.”

And I reject neurotypicality. It doesn’t exist. And for those who would tell parents that we not only don’t belong to the neurodiversity community, we don’t belong to the disability community, I’m going to borrow Colbert’s wag of the finger (you decide which finger that is), and point out that the disability community is a large segment of our population and the older one is, the more likely one belongs to it. Don’t assume that a parent doesn’t have an issue, a disability you don’t know about because he or she hasn’t disclosed. I won’t presume your functional level based on what you can do on a keyboard if you won’t assume my lack of disability.